?lots of?what are your best ways of dealing the emotional impact of having IC?

[Katrina]

This is a hard question. It affects our emotions, our families, our friends, and we can look at almost everything differently. It is hard to get understanding from family, friends, doctors, which makes the impact greater.

1. Anger is a normal reaction .....and do suggest letting those emotions out in some way but just expressing the emotions is only one part. What else can we do?

2. Part of the emotional impact of IC is feeling you have lost control...what helps you to feel like you are gaining that control back?????

3. guilt is common emotional response....what help you to deal with the guilt? or what advise do you give to others that feel guilty about having IC?

4. What are some good ideas to help people in your lives give you the kind of support you need???

5 What are your biggest obstacles in dealing with IC?

6. What helps/helped you gain acceptance and what continues to strengthen your outlook on your health?

7. Any advise on dealing with stress of any kind?
8. Anything I missed?


THANKS A BUNCH FOR YOUR HELP!!!!!!!!

[Katrina]

REPOST....THIS IS VERY IMP. TO ME i WANT TO WRITE ABOUT IT...PLEASE HELP IF YOU CAN! THANK YOU

[Snuph]

Although this does not answer your questions, what has helped me is accepting that I have a new "norm". I will never be the same physically so I learned to accept that my new "norm" means flares, pain, diet changes, accepting good days and bad days (as just that). Once I accepted my norm and stopped battling it emotionally, I found it easier to live.

[Imustpee]

I had IC for 40 years.....so very very long....I know no other way of life...the pain and pressure was with me for so long it was who I was, how I always felt..sometimes during flares it would get worse ( If that is even possible) that I would cry and become very angry and frustrated....3 months ago I reached all I could take and had my bladder removed...I am very glad I did that because now I can see a whole new life ahead of me without IC making all the choices I take in my life.... :woohoo:

[Katrina]

Thanks!

[creatingkarma]

Simply put - understand.
Understand when we're tired.
Understand when we hurt.
Understand when we need to cry.
Understand when we need to shout.
Understand when we don't get out of bed.
Understand when we don't want to leave the house.
Understand when we're angry.
Understand when we're sad.
Understand that it's not because we don't want to.
Understand that we can't always stick to plans.
Understand that they can't fix us.
Understand that it's hard.
Understand that it's real.
Understand that we're suffering.
Understand that we're doing all we can.

[Cheries]

What helps me the most is to accept the fact that everything is temporary, including pain. Nothing last forever. I will be either better, the same or worse tomorrow. I tell myself that "This too shall pass" and believe that I will do better. I also had to keep from comparing my life to others as it gets debilitating to do that. I also stay very active and try to do everything I can anyway. Even if I am in pain I still work, I still do aerobics, I still have a sex life. I don't let it change me too much. Of course there are times when I do have to scale back and when I do I tell myself that it isn't for always. It has also been a battle for me to have to take meds. So many people have made comments to me about not wanting to put all those "chemicals" in my body. I usually respond that those "chemicals" are making me part of the human race. I truly believe that no group of stronger people exist than those with IC. We just have no choice, we have to be strong. I also keep the hope alive that I will get better.

[Katrina]

Karma, very well put...excellent!!! Thanks a bunch !!!

Cheries, that was excellent too....thanks so very much!!

Thanks a bunch I will most definatly be using this stuff. (I am starting to realize that this topic may turn into my longest newsletter so far lol)
Thanks so much for your help

[ads]

For me the biggest problem is having enough money to pay the medical bills and finance the medical goals that would be ideal for my optimal health. (If I can think beyond next month, then I start to worrying about retirement and the thought that my wealth building years have been stolen by a chronic illness…)

If I keep up payment for the basic medical expenses, then I don't have enough money to have a fit place for shelter/housing. That leaves me living with in a nasty place or with family members who don’t want me around.

My family doesn't understand and never will because it is easier for them to be in denial than face the upsetting truth about the devastation of chronic disabling illness.

I am basically a one-man show... or should we say one-woman? (This won't change because I couldn't possibly live with putting another person thru watching the day in and day out pain and torture of this disease)

I don't have any hope left of getting better or improving. Each day is the same -- there are no flares each day is full of constant disabling pain and urgency.

I look forward to reading your newsletter, but for the worst of us there isn't an easy answer, perhaps there isn't any answer at all. Maybe getting to the point of accepting that state is the key.

Besides these issues everything is A.O.K.

ads

[Katrina]

ads, I know of a few stories who I would have said previously the worse of us, that did find a plan that brought them into remission. It takes longer but it has happened. When it doesn't, Imustpee's story seems to say to me that she is very happy that she had her bladder removed. There are still options.

I know there are times when family members refuse to accept the trueth. We can only control our own actions so if that is the situation I am sorry.

Even if there isn't an easy answer doesn't mean there is no answer at all.

[Trishann]

Katrina this is the first time I saw this thread. I know this is a old thread but it caught my eye. I think CreatingKarma summed it up for me. UNDERSTANDING......Wow that is the truth. To acknowledge this and accept the truth does help you emotionally because we aren't fight so hard against ourselves but learning step by step how to deal with each one of these issues.

Take care, Trishann

[ads]

Katrina,

I didn't see your respnse earlier. Usually I don't post about myself, but did so because of your need for information for writing about IC. I wasn't asking for advice in any manner or a answers, but thank you for your response. I have been all over the country and seen some of the best uros and pain docs for IC, and know in my case what options are left. Please be aware there are probably 1,000s of IC patients living in severe pain despite the best of treatments. Some of the IC cases are mild and others are extremely disabling. Think about it, Why do you think the ICA publishes information about IC and suicide?

I don't know who is going to be reading what you are going to write about IC, but NO there isn't always an answer to the problems IC brings into our lives. It plain old destroys many segments of patients lives as seen in the many posts on this board. (Divorces, Custody Battles, Not being able to date, Not being able to work, The economic and financial hardships, etc.) I am way past the "easy" answers and years ago moved onto the diffucult ones, which require great sacrifices. Please remember, life with IC isn't simple.

Again, I am apologize for the delayed response, but felt your post needed a response. Thank you for the group hug that was very sweet. I wish you best on your writings.

ads

ads, I know of a few stories who I would have said previously the worse of us, that did find a plan that brought them into remission. It takes longer but it has happened. When it doesn't, Imustpee's story seems to say to me that she is very happy that she had her bladder removed. There are still options.

I know there are times when family members refuse to accept the trueth. We can only control our own actions so if that is the situation I am sorry.

Even if there isn't an easy answer doesn't mean there is no answer at all.

[Katrina]

I tend to be at times overly optimistic....I am sorry if I bothered you. It is true that some of the problems that IC brings will leave a permanent mark. I don't disagree with you. I just feel that we can still fight and do something...I have lost the battle with some of the illnesses in my body....had to give up and have something removed...and at times it is a loss. I do though feel that even when nothing is working, that we have options...like how we deal with that situation. I am sorry if I didn't state that well. In no way did I mean to say that there are not many patients that have tried multiple treatments and still had little if any improvement. I am well aware of the seriousness of this.


The newsletter did go out quite a while ago...but that doesn't mean that this isn't still a subject that needs discussion.

[Trishann]

ads, I also hope you don't think I thought that there was always a answer to IC or it is easy. I know that it is not easy, I also have a severe case of IC. I was told there is no medical help except for bladder removal.

I fight daily with this and all the issues that comes along with it. I use to fight myself because I was to tired to keep going. Now if I am tired I will stop. I fought myself because sometimes I had very bad days, now I know I will have them and I don't have to beat myself over it. This is the kind of stuff I am talking about. I still struggle and have my hardship and sometimes it just seems hopeless but now I know I will have those days to and try not to take it at heart, and wait for better days.

I pray for healing, I pray for a miracle and I will continue to do so. Is it easy, NO? Coping skill don't aways help but sometimes it does so I will continue to try.

I would never belittle your pain or your suffering, I know it is there. I think we are just trying to find ways to help ourselves even if it seems really small.

Sending hugs your way, Trishann

[kadi]

1. Anger is a normal reaction .....and do suggest letting those emotions out in some way but just expressing the emotions is only one part. What else can we do?
I journalled a lot, because other people didn't know how to handle my anger & grief. (And it really ticked me off that most people I talked to told me to see a counselor!) I did do that, but I was specific in the type of counseling. I sought help from people equipped to deal with chronic illness: a medical social worker, a minister whose wife had IC & chronic pain, a Stephen Minister, a friend who has managed well with pretty severe lupus. I found that regular psychologists really aren't the best people to support us, unless they have some training or experience with illness & are familiar with the issues that come along with it.

2. Part of the emotional impact of IC is feeling you have lost control...what helps you to feel like you are gaining that control back????? To look for the essence of things I used to do & try to find ways to continue enjoying those things, in spite of IC. I used to travel internationally every other summer, it was a huge benefit of being a teacher. Due to extreme food sensitivities & allergies now, it is very hard to do this, so for now I subscribe to National Geographic, take day trips to museums on my good days, read in Spanish & rent videos in Spanish. I'm hoping (if I'm well enough) to go overseas one summer, rent a flat so I can cook for myself while there. It's not what I used to do - group programs were easier, less isolated, & less expensive, but it would still be great if I'm actually able to do this. I did, however, have to work through my grief before being able to do or consider some of these things without crying.

3. guilt is common emotional response....what help you to deal with the guilt? or what advise do you give to others that feel guilty about having IC?
I felt guilt initially, wondering what I'd done to myself to get IC, but a year and a half later, my mom developed IC & it turns out that my grandmother probably has a mild case as well. I think that for most of us, it was a predisposition that somehow gets set off & it's not our fault.

4. What are some good ideas to help people in your lives give you the kind of support you need???
Being specific in what others can do helps a lot.
1. I've asked friends if they'd be willing to take me if I need to go to the ER (have only needed this once, but I'm very relieved there are people nearby willing).
2. I've specifically asked friends to do things that don't involve food, like renting videos, walking in the park, going to a local museum, to substitute for the typical ethnic restaurant/movie evening very popular here.
3. When I needed rides for treatments, I thought through the people I knew & first asked the women who I thought might have time & who had had health challenges of their own (diabetes, lupus, breast cancer) - they knew the importance of the rides better than anyone else, were willing & they encouraged me by their own courage.

5 What are your biggest obstacles in dealing with IC?
1. The extreme diet (IC, IBS, food allergies) I have to follow can be isolating. And other people's advice to "just not let it bother you" is something I can follow sometimes & other times, I'm just not up for the stress of the potluck or dinner at a friend's house with nothing I can eat, unless I bring it, look different & have to field or dodge the questions. Yes, there's usually a way through it, but sometimes I just don't want to deal with it & avoid the situation. And I think just being kind to myself about either choice I make (to go or not) is what works best for me.
2. My own unreliability was isolating: For a long time (several years) I never knew if I'd feel well enough to keep plans. I just explained the best I could & kept the friends who were flexible, let the ones go who weren't. I didn't buy (and still usually don't) buy time specific event tickets, because I knew it made a hardship for people when I'd cancel.
3. I did try to think through "levels" of social contact:
Things I could do when flaring, homebound, & antisocial: crafts for birthday gifts or Xmas gifts
Things I could do when flaring, homebound, but lonely: calling a friend, writing "just thinking of you" cards (I buy boxes of greeting cards so I always have some at home), clipping articles I think friends would like, posting messages here, listen to church service on the radio or download my church's sermons online
Things I could do when flaring mildly: watch a video with a friend, play board games or read with my friend's children.
Things I can do when feeling great: go to church, movies, light exercise, go out with friends.

6. What helps/helped you gain acceptance and what continues to strengthen your outlook on your health?
1. My faith in God and in His ability to provide for me in all situations.
2. The Encouragement Bible: the bible with sidenotes by Joni Eareckson Tada & Dave Dravecky & his wife.
3. Having had a Stephen Minister from my church to talk & pray with over several years
4. Counseling with a medical social worker on acceptance, coping strategies & pain management emotionally
5. Books:
---"The Chronic Illness Workbook: Strategies & Solutions for Taking Back Your Life" by Patricia A. Fennell, MSW, CSW-R
---"A Delicate Balance: Living Successfully with Chronic Illness" by Susan Milstrey Wells
---"Elf Help for Coping with Pain" by Anne Calodich Fone (cute illustrated book of elves & very concrete suggestions for pain management).

7. Any advise on dealing with stress of any kind?
Remember not to try to do everything alone, to let others help. To remember that all things pass, even if it doesn't feel like it. To try to maintain healthy habits, even if it's hard-because that will make the crisis shorter & not create a new one later.

8. Anything I missed?
To know that others have struggles as well; to learn from those people & to be of service in the ways we can with what we have learned from IC & its impact on our lives.